Joint Initiative Leads to Successful New Book, "Faces of Pompe"

In a world where randomized natural history studies, outcome measures, placebo controlled trials and p values are all important to increase our understanding of rare diseases, we sometimes need to be reminded that behind every statistic there is a person, a family and a story.

Recognizing this need, the Faces of Pompe book was born from a collaboration between the Dutch neuromuscular patient association (Vereniging Spierziekten Nederland - VSN) and Genzyme Netherlands. The book features striking black and white photographs of 14 individuals, from all walks of life across the Netherlands that are affected by Pompe disease—a progressive and debilitating neuromuscular disease. Alongside each "face" is a short story in their own words about their diagnosis, work, life, family and loved ones—about living with Pompe disease.

The objectives of this beautiful book are to create awareness about the impact of Pompe disease, and equally important, as a testament to their determination to live their lives just like everybody else.

Gisela Linthorst from Genzyme Netherlands shared her thoughts on this collaboration: “We are honoured to partner with the Dutch Pompe community in the development of this book and would like to thank everyone who participated in this wonderful project. By working together on a shared goal to create disease awareness, we can strengthen the voice of all those living with a rare disease.”

Reactions to date have been extremely positive and copies of the book were distributed at the recent “Passion for Pompe” symposium hosted by the International Pompe Association in Rotterdam. As proof of awareness in action, during this event featured participants were even asked by strangers to autograph their own photo!